A Life Everlasting (15 page)

“I appeal to you, Lions,” she said, “you who have your sight, your hearing, you who are strong and brave and kind. Will you not constitute yourselves Knights of the Blind in this crusade against darkness?”

And so they did. The support of efforts to help people see has been a central tenet of the Lions Clubs ever since. And the Old Dominion Eye Foundation, Inc., was founded in 1962 with the help of the Lions Clubs.

It was a long way from Melvin Jones and Helen Keller, but as with so much of what happened with Thomas, I realized that his donation was part of a long line of such acts—acts of service that could move forward only when like-minded people got together and decided to “start doing something for somebody else.” More than thirty-three thousand donations have been processed by Old Dominion since those early days, and more than fifteen thousand people have had their sight restored through transplant, thanks to all of the people who helped establish the ODEF.

I learned that Thomas's eyes were recovered by 7:30
A.M
. on Monday, March 29, at Children's National Medical Center, by David Taylor, the branch manager for the Old Dominion Eye Foundation at their Fairfax, Virginia, office. The corneas were then transported to the ODEF's Richmond, Virginia, headquarters and arrived the next day: Tuesday, March 30. In Richmond, they were checked, cleared for defects and scars, and prepared for shipping by Jennifer Payton, the lab coordinator. Her signature appears on Thomas's paperwork. That afternoon, the
corneas left ODEF for Schepens Eye Research Institute in Boston via Federal Express. They arrived in Boston on Wednesday, March 31—the day of Thomas's funeral.

On a sunny August day Frank and I arrived at the brick building on Arboretum Drive that houses ODEF. We were greeted by the hugely smiling faces of Christina Jenkins and ODEF's executive director, Bill Proctor. They exuded welcome and excitement. Bill has been in the profession for thirty-five years and is a leader in the field. Early in his career, he worked closely with the National Eye Institute in Washington, D.C., and he saw firsthand the impact of research and the need for research tissue.

I believe it's because of Bill Proctor's passion for research that Thomas was able to donate. It turns out we were very lucky that we lived in Washington so that we were in range of ODEF. Had we lived in a different part of the country, or had Thomas died elsewhere, his eyes likely would not have been recovered, because infant corneas aren't suitable for transplant. They are too flimsy, and many eye banks will not recover tissue that is not suitable for transplant, even though such tissue is extremely valuable for research and there is often a waiting list for it.

Like many eye banks around the country, ODEF has a mission statement that includes donation for transplant as well as research. But since a single cornea intended for transplant is reimbursed approximately three thousand dollars, and a cornea for research is reimbursed only a tenth of that, tissue for transplant is the main goal of most eye banks. When eye tissue is not suitable for transplant, sometimes organ-procurement organizations forget to even ask about research opportunities. And many eye banks and OPOs have a practice of recovering for research only if a family specifically asks.

But research tissue is no second-class citizen at ODEF.
Thanks to some funding ODEF receives from the Lions Clubs, ODEF can afford to procure eye tissue for research without as much concern for the reimbursement of processing fees. (Although most eye banks are nonprofit, they still need to cover the expenses of equipment, accreditation fees, training, and staff.)

ODEF works closely with WRTC, which covers Washington, DC, and northern Virginia, as well as LifeNet Health, which is the OPO for southern Virginia. When either group gets a call from a hospital that a potential donor has died or is likely to soon, they reach out to ODEF. ODEF then checks its own database first to see what corneal transplants are waiting, and then its database of local research projects. They also work closely with the National Disease Research Interchange (NDRI), since they keep a national registry of research projects.

At Old Dominion I presented pictures of Thomas and the researchers we met, and afterward Bill Proctor said, “I've always known that research was vital, but meeting you, hearing your experience, really brings it home. Thank you.”

During our tour, Bill showed us the microscope they use to do visual inspections of the corneas. Corneas are checked for signs of damage, disease, and scarring. In 2013, corneas with a LASIK scar were less likely to be used for transplant, so ODEF donated them to doctors in other countries, such as Egypt. Today, there are two new processes—Descemet's stripping endothelial keratoplasty (DSEK), and Descemet's membrane endothelial keratoplasty (DMEK)—that allow some LASIK-scarred corneas to be transplanted. Instead of removing and replacing the entire cornea, which can contain a LASIK scar, a smaller part of the cornea that does not include the scar is recovered and used for transplant.

Bill also explained that humans are born with perhaps six
thousand or seven thousands cells in their corneas, and that number diminishes with age. ODEF has a general guideline that acceptable corneas for transplant should have a minimum of two thousand cells. Corneas with lower counts are more likely to be shipped overseas or sent for research, and the initial count is done right here at ODEF.

And then I was introduced to Jennifer Payton, who had become a mythical figure in my son's life.

I was overwhelmed with emotion when I met Jennifer, because she had processed Thomas's eyes.

As ever, I was the first donor mom she'd ever met. As soon as we could, Jennifer and I quietly sneaked away from the group. I wanted to know how eyes were recovered (that was part of her job, too), so she took me to her lab, where she showed me a package the size of a manicure kit with the recovery tools inside. It was simpler, and even more fascinating, than I'd imagined.

After the tour, we all went to Carytown, a trendy neighborhood in Richmond, and had lunch at a French bistro. The ODEF staff said that most of them had never met a donor's family before—a refrain I was getting so used to hearing. As we talked, I realized that it was these people, sitting at this table, who had made Thomas's donation possible, and my heart swelled with gratitude.

“We're going to go back to work refreshed to keep doing what we do,” said Christina. “I think we needed this.”

You and me both
, I thought.

I stayed in touch with the staff at ODEF; Bill invited me to speak at their 2014 annual meeting. He told me later that a number of the board members remarked that they hadn't fully believed him all the years he'd been advocating for the importance of donating for research until they heard Thomas's story.
These meetings seemed like one of those rare cases of a true win-win.

Back at home, Ross was supportive of my new line of work, and he was glad to learn about the difference that Thomas was still making. As parents, we got a lot of questions about when we would tell Callum about his brother. We decided early on that we would never lie about Thomas's existence, or hide the facts from Callum. To me, being an identical twin is part of Callum's identity, and it would have felt strange to keep it from him. Also, baby photographs from the hospital revealed two children; there was no hiding that there was another baby in the bassinet with him. But why
would
we hide it? Thomas's death was simply something that happened, not something to be ashamed of or embarrassed about. We decided to display two photos of Thomas in our home, and we made a book of photographs of Callum and Thomas together to share with Callum.

Ross and I continued to visit Thomas's grave a few times a year—on his birthday, or if we happened to be driving that way. When Callum first started learning to talk, he asked us some fascinating and heartbreaking questions: “Is Thomas scared under the stone?” “Will he ever come out and play with me?” We answer the questions as honestly as we can. We told him Thomas will never come play because he died. Everyone in the world will die at some point. A lot of people are older when they die, but people can die anytime, even when they are young. Sometimes young kids get sick or have an accident and that is just part of life. None of us knows when we will die, but it's okay to die. Maybe we will even see Thomas when we die.

One day I was talking to little Callum, and I told him that some people say there is a place called Heaven.

“What is it like in Heaven?” Callum asked.

“I don't know. No one has been there and come back,” I
told him. “Nobody knows for sure. What do you think happens there?”

“Look it up on your phone,” he said.

At a loss, I bought a book called
What Is Heaven
, by Maria Shriver, and read it to him. A few months later, after a trip to Scotland, he came back to the subject.

“Mommy, remember that book that said Heaven is above the clouds?”

“Yes.”

“Well, that's not true. Because I was on an airplane, and I was above the clouds, and I did not see any people.”

On the twins' third birthday, we planned to stop by Thomas's grave and leave flowers. I told Callum he could draw a picture or write a note for his brother that we could leave on the grave. He drew one portrait of him and his brother eating french fries at McDonald's, and another of the two of them under a tent, camping.

That day, I asked him what he had wished for when he blew out his birthday candles, and he said, “I wish Thomas would be able to walk and play with me.” It touched my heart and broke it at the same time. He saw other people who had a brother, and he wanted one, too. Things were beginning to sink in; he was starting to understand something about life, and about death.

What do you say to a child who wants to play with someone who is dead? All I could think of to say was, “Are you sure you don't you want Legos or something else?”

One day, Callum asked me if Thomas was still his brother even though he was dead, and I said yes. These moments were poignant, but not impossible to face. Perhaps in the past it was more common for young children to have a personal experience coping with death. In some countries, that is still a common experience. In modern-day America, it seems unusual. The
topic is taboo, and we choose not to discuss it; but this can be isolating to a person who is grieving. I wanted to show Callum that coping with death is a normal part of life, and that feeling sad is normal.

By the time he was four, Callum had been to four family funerals: Thomas's; that of my stepfather, Bob; and those of both of my maternal grandparents. As he processed these events, he went through an interesting phase. For a few months, Callum would lie flat on the floor and say, “Pretend I'm under a stone. Put flowers on me.” Whereas this might be cause for alarm in another family, it made sense in ours. This is a child who regularly visited a grave, in a safe environment with his family. The same way he playacted other events from his real life—like pretending to give us flu shots, or dental cleanings, or haircuts—he was also asking us to playact a funeral. Why not? I pretended to put flowers on him.

“Cry!” he giggled, pleased with his new game. “Be sad!”

“Waaaah!” I fake-cried. “I miss Callum so much.”

“Now you go under a stone. Your turn.”

Once, Callum said to me, “You have one son in Heaven and one son on earth.”

“I guess that's true, yes.”

“Do you know who else is in Heaven? Cheez-it.”

I repeated the word quietly to myself a few times before I got it. He wasn't talking about crackers; he was talking about Jesus.

As a result of our open discussions, Callum is pretty matter-of-fact about his missing brother. We were having a family portrait taken one summer during a seaside vacation, and the photographer asked Callum, “Do you have any pets?”

“No, but I have a brother who died.”

While Callum seems okay with it, grown-ups are occasionally taken aback by the open way he talks about Thomas. It
reminds me of the way a generation or two ago people would say the word
cancer
in a whisper, as though it were scandalous.

Even though Thomas isn't here, Callum enlists him when he's feeling a bit mischievous. He'll run up behind me and slap me, and I'll turn around and say, “Who was that?”

“That was Thomas.”

And like all brothers, Callum is protective of Thomas. If someone asks me how many children I have and Callum hears me answer, “One,” he'll jump in and say, “No, no, you have two. You forgot about Thomas!”

I hope when Callum is older he'll fully understand that, no, I haven't forgotten about Thomas.

I'll never forget about him.

Mortui vivos docent

Bethany Conkel was eleven weeks pregnant when she and her husband, Eric, received the devastating news that their child had anencephaly—the same neural tube defect that Thomas had. The Conkels, who are committed Christians, decided to carry the pregnancy to term and make the most they could out of their child's life and death.

“We felt from the very beginning of the pregnancy, even before we received the diagnosis, that the Lord was going to do something very special with this baby,” Bethany said.

At fifteen weeks, they learned they were expecting a boy. The first step, then, was to pick a name with significance: they chose Amalya, a Hebrew word that means “work of the Lord,” and for his middle name they chose Nathaniel, which means “given by God.”

The Conkels thought about the kinds of things they would like to do with their son and drew up a bucket list: go to a local park with a long slide, go to a baseball game with Grandpa Dan, go camping, kayaking, to the zoo, to a monster-truck show—and, most especially, go on a visit to a Waffle House, where Bethany and Eric went after their wedding and where they continued to celebrate anniversaries. They decided to do these things “with Amalya” while he was in utero.

At the time of the diagnosis, Eric was an undergraduate studying physical therapy and working in the anatomy lab at the University of Dayton, in Dayton, Ohio. He had seen firsthand how much the
students learned from one donated human body, and his experience as a student gave the Conkels the idea to donate.

Bethany and Eric called universities near their Dayton home, including the University of Dayton, Wright State University, and the University of Cincinnati. They were stunned to learn that there was no need for a neonatal donor. In one instance, Bethany was told that studying an infant would be too emotionally difficult for the medical students.

Bethany and Eric then called hospitals, thinking there would be a need for Amalya's body for practice surgery or research. Again, the answer was no.

Bethany asked the genetic specialist who had given her Amalya's diagnosis if she knew of any options for donation. She didn't, but she provided Bethany with the contact information for Life Connections of Ohio, the federally designated nonprofit organ-procurement organization for northwestern and West Central Ohio.

Bethany called Life Connections and learned there might be a possibility for a tissue donation—Amalya's heart valves—if he met certain weight requirements at birth. However, regular ultrasounds during the course of the pregnancy showed that Amalya would likely be too small.

Bethany wondered whether there was anything else she could do. She wasn't going to give up until she knew for sure.

Life Connections offered to contact their partner, the International Institute for the Advancement of Medicine, or IIAM, to inquire about research donation options for the Conkels. IIAM was founded in 1986 and partners with fifty-five organ-procurement organizations across the country to connect available specimens with the researchers who need them.

But weeks passed, and Bethany heard nothing.

Bethany's C-section was scheduled for September 10, and on
September 5 she called Life Connections of Ohio one last time, just to see if they had any news for her.

“I'm so sorry; things are not working out,” her contact explained. “Every door is shut. There are no suitable research placements. Your baby is too small to donate for transplant. We're really sorry.”

That evening, she told Eric, “I'm at peace. I know we've done everything possible. Let's just enjoy the last few days with our baby.”

But after a few restless nights, Bethany realized that she really wasn't at peace. On September 7, Bethany called the 800 number on IIAM's website and reached the call-center answering service. She asked about whole-body donations, and explained the urgency.

“Let me find someone who can help you,” said the call-center representative.

A few hours later, Bethany finally got the call she and Eric had been waiting for. The IIAM rep told her that they had found research placements for Amalya's liver, pancreas, and whole body. In order to donate, Bethany would be required to sign a consent form, complete a medical and social history interview to disclose events in Bethany's life that may have exposed the baby to infectious disease, and provide a sample of blood on-site at Life Connections of Ohio—only five miles from their house. Heavily pregnant but delighted, Bethany asked her father if he would drive her there.

Bethany happily completed the paperwork and answered some personal questions—such as “How many sexual partners have you had?”—in front of her father.

“Fortunately, I have a pretty open relationship with my dad, so it was nothing he didn't already know,” she laughed. By the time she got home, she felt relief washing over her.

“We were able to enjoy that last weekend with our son, knowing that we'd done everything to make the most of his short life. Now we were going to be able to make the most of his death as well.”

On September 10, 2012, Amalya Nathaniel Conkel was born by C-section at Miami Valley Hospital in Dayton, Ohio, at 7:51
A.M
.

As soon as he was born, the doctor laid him on Bethany's chest.

“He's so precious,” she said to Eric. “I wasn't expecting him to be this precious.”

Eric helped clean his body and place him on the scale. He was four pounds, nine ounces. As the doctor sutured her incision, Bethany and Eric told Amalya how much they loved him and how special he was. Both Bethany and Eric held Amalya to their chests for skin-to-skin contact. Once the surgery was complete, the new family of three joined the extended family in a private hospital room. Amalya's eyes were open, but he did not move or cry. Six grandparents and three great-grandparents were able to hold him while he was still alive, and a total of nine aunts and uncles were able to meet him.

After an hour, Bethany felt a mother's intuition. Though there were no outward signs, Bethany felt it in her heart.

“Oh, Eric,” Bethany said. “He's leaving us.”

The nurse checked Amalya's heartbeat; it was at only five beats per minute. Bethany's dad, a pastor, laid his hand on his grandson and said a prayer as Amalya passed away in Bethany's embrace at approximately 9:10
A.M
.

“I know he felt our love,” Bethany said. “His entire life was spent in the arms of those who cared for him deeply.”

In the moments after he died, family members held him and said their good-byes. Then Eric carried his son down the hospital corridor to the operating room, where a special team of surgeons was waiting to recover Amalya's pancreas, his liver, and the blood from his heart. The surgery took about two hours. Once the recovery was complete, they sutured Amalya's flesh down the front of his sternum, covered it with a bandage, and dressed him.

A doctor returned Amalya's body to his family. The Conkels were
told that the recovery went well and the organs were in great condition for the researchers.

“We were thrilled,” said Bethany.

The Conkels were joined by twenty-seven friends and family members and spent the rest of the day taking pictures of Amalya, making prints of his hands and feet, and giving him lots of hugs and kisses.

“We even had a birthday party complete with cupcakes, a ‘birthday boy' hat, a ‘zero' candle, and a tear-filled round of ‘Happy Birthday,'” said Bethany. “Joy overflowed from our room that day. I can't even describe in words what it was like.”

Because the Conkels chose to participate in whole-body donation, Amalya's body needed to be cooled within twelve hours of his passing. Each family member said a final good-bye and then left Bethany and Eric to have a private moment with their son.

“Finally, we called for the nurse and handed our sweet boy over for the last time. The moment I let him go, my heart shattered. It was the hardest thing I've ever had to do. I was so in love with this sweet gift from the Lord, but I knew it was time for him to fulfill the rest of his purpose here on this earth.”

Because of all the confidentiality protocols, all the Conkels knew was that Amalya would be studied by researchers somewhere in the United States. They wondered who would hold him next. That's when Bethany got an idea.

“Do you have a marker? A black Sharpie or something?” Bethany asked Eric. “I want to write a note to the researchers.”

Eric searched his backpack.

“All I have are these two highlighters,” Eric said, holding up one pink and one green one.

“They'll do,” Bethany said.

Eric and Bethany each made a thumbprint in the shape of a
heart, and under each one wrote “Mom” and “Dad” in green. Below the hearts, they wrote in pink, “We hope he helps. Use him well.”

Bethany and Eric left the maternity ward for home two days later. They were led through a back door so they didn't have to walk past the happy new families in the lobby.

On the way home, Bethany's phone rang. It was 11
A.M
.

“We just wanted to let you to know that Amalya's flight has departed. He is on his way to the research facility now.” Bethany Conkel felt a glimmer of hope.

Over the weeks that followed, Bethany and Eric learned more about where their son's donations went. Amalya's cord blood was sent to the Duke anencephaly study, where Thomas's and Callum's cord blood had gone. Blood from his heart and a small sample of his skin was sent to the Coriell Cell Repository in Camden, New Jersey, to develop cell lines to be stored for future research studies. His liver went to a university in the United States to study liver disease, including cirrhosis. His pancreas went to another university in the United States for the study of pediatric diabetes. And the rest of his body went to an emergency-medicine facility in Texas.

In many cases, a donated whole body is studied by medical students to learn about every structure of the human anatomy. A deceased donor whose body has had some of the organs removed is not suitable for this kind of study. However, Amalya's body, which was missing the liver and pancreas, was a suitable match for a special research project that involved the skeletal structure.

When an ER patient is dehydrated or in shock, his or her veins can collapse. When a vein can't be accessed, paramedics have another option: they can use a drill-like device to make a small hole in the patient's bone. This technique, called intraosseous access, or IO, was developed in 1922 by Dr. Henry Drinker, who first showed that it could work on, of all things, a rabbit. During World War II,
the technique was used in the European theater to treat combat injuries.

Then, in 1984, James Orlowski, a physician from the renowned Cleveland Clinic who was working in India during a cholera outbreak, wrote an article in the
Archives of Pediatric and Adolescent Medicine
entitled “My Kingdom for an Intravenous Line.” In it, Dr. Orlowski lamented, “There is nothing more exasperating than the inability to establish intravenous (IV) access in a critically ill child.” Having repeatedly faced sick children with no “visible or palpable veins,” Orlowski advocated for intraosseous access, since just about any medication or fluid such as saline or blood could be administered this way safely because a bone is essentially a large vein that will not collapse.

As a result of Orlowski's advocacy, IO was widely adopted in the United States for use in children, whose veins are smaller and can be more difficult to access through IV. For years, the most commonly accepted application site for pediatric cases was the tibia—the shin bone.

Scotty Bolleter, chief of the Office of Clinical Direction at the Centre for Emergency Health Science at Bulverde Spring Branch Emergency Medical Services in Spring Branch, Texas, is a passionate advocate of furthering the course of emergency medicine—and of improving the IO method. A veteran EMT and paramedic, he has trained thousands of physicians, nurses, physician assistants, and members of the military in what are called “advanced skills,” although Bolleter considers them fundamental skills: the techniques for saving a soldier injured in combat or the next patient brought into the ER by ambulance. In partnership with a company called Vidacare, Scotty redesigned the IO technology in a device they named the EZ-IO. This is a handheld device, about the size and shape of a hot-glue gun, with a thin, 1.5-inch needle at the end.

According to Bolleter, the tibia was not the best location to establish IO, because the compartments in the muscles near the tibia are in close proximity to the bone, and if the needle is not placed perfectly into the bone, these compartments will swell. This buildup in pressure is called compartment syndrome, and it can lead to the death of a muscle and even the loss of a leg.

Bolleter proposed an alternative location: the femur. The muscles around the femur do not have the same properties as the those around the tibia and do not cause as much swelling if a needle is badly placed. As a result, the risk of compartment syndrome decreases—and evidence from tests indicated that the femur bone allowed better fluid flow in any case.

Bolleter would need to prove this to the FDA in a process called a Premarket Notification 510(k) clearance. This is the process by which the FDA determines whether the new device is similar to a device that has already been approved by the FDA, and therefore does not need an entirely new and lengthy clearance.

“The 510(k) process is like, ‘Hey, Mom, that guy is doing it. Can I do it, too?'” said Scotty.

Bolleter and his Vidacare colleagues submitted their first 510(k) application for FDA approval of the femur location in 2007, and received their first rejection later that year, citing “lack of definitive proof” as the reason and asking for more detail. Bolleter was frustrated and heartbroken, but something kept him going.